Stories

Preparing Teens to Manage Their Healthcare as Adults

Our Heart Center team helps teens learn to manage their health as they prepare to leave the comfortable nest of pediatric care.

Drs. Laura Richardson and Leslie Walker lead the effort to standardize how Seattle Children’s helps
teen patients learn to manage their own healthcare as they reach adulthood.

When Dr. Leslie Walker joined Seattle
Children’s seven years ago, she figured
her days of caring for adolescents at
Georgetown University Hospital were
over. She was wrong.

“I still get calls from people living in
Washington, D.C., who are now in their
late 20s. They track me down and say,
‘I haven’t seen a doctor in seven or
eight years and you know me and I
trust you, can you please just do this
one thing for me?’”

Walker’s experience underscores
a national problem. Each year millions
of young adults (ages 18 to 21) in the
U.S. “graduate” from pediatric care
and must move on to an adult provider,
yet many aren’t ready to leave the
trusted relationships they’ve developed
with their pediatricians. What’s more,
the maturity they need to take
responsibility for their own healthcare
competes with feelings of invincibility,
rebelliousness and desire to be like
their peers. It’s a mix that often results
in years spent without a medical home.

For those with chronic illnesses, this
scenario can be downright dangerous.

“Teens with chronic conditions
flounder during this transition and
their baseline health takes a dive
because of it,” says Dr. Laura Richardson,
an adolescent medicine specialist at Seattle Children’s. “As pediatric providers,
we’re trained to embrace the whole
family and create nurturing environments
that support the delivery of
care. Where we fall short is making
sure our teens are prepared to sit in
the driver’s seat of their own healthcare
when they reach adulthood.”

Teens with chronic health issues often
flounder as they move from pediatric to
adult healthcare.

Walker and Richardson are leading
the effort to standardize the way teen
patients at Seattle Children’s are transitioned
to adult care – a best practice modeled on national standards developed by
the Center for Health Care Transition
Improvement. One example of Seattle Children’s innovative work involves
a unique partnership between
cardiologists at Seattle Children’s and the
University of Washington (UW).

Bridging two systems

Autumn Rusch (at work in the playroom at Seattle Children’s Bellevue Clinic and Surgery Center) received the eighth
heart transplant at Seattle Children’s in 1996. Every year, she shares her tips for maintaining the health of
a transplanted heart with teens at an annual healthcare transition day.

Dr. Karen Stout made an important
realization during her fellowship
training at UW to specialize in adult
cardiology: kids with heart disease
need lifelong cardiology care to
manage the heart defects they were
born with, yet most cardiologists are
trained to manage heart disease
acquired in adulthood.

Stout completed extra training in
congenital heart disease at Seattle Children’s
to better understand the needs of young people born with heart issues.
Her training in both worlds led her
to develop one of the only programs
in the nation where a small team of
providers works at Seattle Children’s and UW's heart clinics to meet teens’ evolving
needs as they mature into adults with
congenital heart issues.

Connecting the dots

Latosha Evans, 17, gets some encouraging words from her cardiologist, Dr. Yuk Law, before a stent procedure. A Seattle Children’s patient since she was one day old, Latosha says Law helped her make peace with her heart condition and be more self-directed in her healthcare.

Latosha Evans had a heart transplant
at the age of 12. At 13, she felt so good
she decided she no longer needed to
take the daily medications that kept her
body from rejecting her heart, so she
threw her pills out the window without
telling a soul. Two weeks later, Latosha
suffered a severe heart rejection episode
and spent weeks in the hospital.

“Heart disease is an imposition for
teens. It’s common for them to pretend like their condition doesn’t exist,”
explains Dr. Yuk Law, medical director
of Seattle Children’s Heart Transplant Program.
“Lecturing or scaring them about the
consequences of not taking their meds
or getting their blood work isn’t as
effective as helping them figure out
what their interests are and where they
want to go in life. That’s when they
start to see the benefit of taking
responsibility for their own health.”

That ongoing conversation helped
Latosha, now 17 and a senior in high
school, make peace with her heart
condition – and be more self-directed
in her care. “Dr. Law is like a dad to me,
sometimes stern and sometimes loving.
He helped me understand more about
who I am, and that makes me want to
keep my health together. I want to be
a family therapist or a social worker,
and I know caring for my health will
be up to me when I go to college.”

Preparing to fly solo

When McCay Cash was 16, his pediatric cardiologist shifted his care to Dr. Karen Stout, a cardiologist
at the University of Washington who specializes in helping bridge teen patients at Seattle Children’s to adult care.

When McCay Cash was a year old,
he had angioplasty – a procedure to
widen the valve that connects to his
aorta, the main artery that carries
oxygenated blood to his body. Twice
McCay underwent open heart surgery to implant bigger valves as his body
grew. His mom, Angela Cash, noticed
over the years that McCay’s clinical
team was having him take ever-increasing
responsibility for his care.

“When he was little, his nurses would
give him choices: ‘Do you want the
blood pressure cuff on your right or left
arm? Which do you want to do first, your blood work or the breathing
treatment?’” remembers Cash.

By the time he was 13, the early
practice making decisions paid off.
“McCay really got that he had more to
do than offer his body up for the exam
and let others make the hard choices.
He even questioned the second open
heart surgery and his team took his
concerns very seriously.”

About five years ago, McCay’s
pediatric cardiologist at Seattle Children’s
shifted his care to Stout so that she
could help McCay move toward adult
care by developing skills like ordering
medications, making appointments,
asking questions about his condition
and acting on treatment recommendations.
Stout’s goal is to instill teens with
the ability to advocate for themselves
and take charge of their own care in
any medical setting.

“Today, we have
more adults with
congenital heart
disease than
children, because
kids with heart
disease now live
into adulthood.”

Dr. Karen Stout

“We spend a lot of time and resources
making sure kids get the very best care
at Seattle Children’s,” she says. “We want to
make sure patients like McCay extend
this health and well-being throughout
adulthood.”

Training the next generation

Dr. Jason Deen, a pediatric cardiology fellow,
is doing an additional year of training in adult
cardiology – with funding supplied by longtime
Heart Center supporter John Thompson – to help
teens make the critical transition to adult care.

Lynn Thompson was in her mid-20s
in 2004 when she finally had to cut
the cord and leave Seattle Children’s.

“She loved Dr. Stanley Stamm, her
cardiologist. He’d been her doctor
since the day she was born,” explains
her dad, John Thompson. “I think
it took her two years to make an
appointment with a cardiologist
who works with adults.”

Thompson, a long-time Heart Center
supporter who started funding the
cardiology fellowship program in
partnership with Seattle Children’s, wanted to
make sure some of that talent stayed
in this region. In 2013, he decided to
fund an additional year of training for
cardiology fellow Dr. Jason Deen – training that gives Deen both pediatric
and adult cardiology expertise.

“Dr. Deen’s commitment to his
patients is exceptional,” says
Thompson. “I’m proud that my support
will allow him to stay in Seattle and
help hundreds of kids make that critical
transition to adult care.”

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Seattle Children’s provides healthcare without regard to race, color, religion (creed), sex, gender identity or expression, sexual orientation, national origin (ancestry) or disability. Financial assistance for medically necessary services is based on family income and hospital resources and is provided to children under age 21 whose primary residence is in Washington, Alaska, Montana or Idaho.